Jump to content

Keith and Carleen Update


Recommended Posts

hello friends

Just wanted to drop a line and let everyone know that Keith and I are doing ok. At least as well as can be expected under the recent circumstances.

Keith's pain is finally coming under control and he's been able to decrease how much medication he is taking to control it. It is almost back to where it was prior to the chemoembellization treatment. He is actually complaining more of the strange neuropathy numbness tingling burning pain in his arms hands and torso more than he is the liver and abdomin now. Not that I want him to complain of anything, it is just a relief for him to not have the excrutiating internal pain that wasn't able to be helped by meds.

He is still very very exhausted and very SOB (short of breath for those new to the acrynms).

Also good news is that his appetite is coming back. He's been eating what I would consider a fairly normal daily diet (less than most men, but at least 3 small meal and a few snacks a day). Although his doctor's appointment today showed he lost another 5 pounds (down almost 60 lbs now from 240 to 179 @ 6'4"), I attribute that to the past week's pain, and from here we can go up as long as his appetite stays good.

Keith's onc has agreed with us to put off doing the left lobe of Keith's liver until we can get some sort of systemic treatment in him (maybe 5-6 weeks), which is only 2 weeks longer than the surgeon says is standard. Usually they do the second half 4-6 weeks after the first, but depending on liver functioning returning to normal it could have been longer. Keith's liver function today looks to be doing well. It was just slightly less than he was prior to the surgery. No idea yet as to a CT to see if the procedure worked.

Although the onc feels chemo will have no benefit, he agreed to try Temozolamide (temodar) and Thalidomide under consultation with a trial being done at Dana Farber of the combo. Keith is going to start with those as soon as he can get the pharmaceutical company to approve him for the thalidomide. He has to take a phone survey and fill out all kinds of paperwork about the risk of birth defects from thalidomide. It should probably get finalized mid next week. Our onc even worked with the hospital social worker without our even asking him to, to try and get our insurance to cover some of the cost of the drugs. He succeeded in getting them to cover 70% of it, so our portion will only be about $2100 a month.

In the mean time Keith and I are just going to lay low this weekend and enjoy each other's company. His mother gave us a gift certificate for a movie theater, so if Keith feels up to it, and wants to get out of the house we may go see a movie with lots of popcorn and goobers.

As for me, I'm doing better. I am a mirror of my Keith. When he suffers I am a wreck, when he is positive and doing well I am on the top of the world. The only things keeping me from feeling truly good is just how truly exhausted I am. I just want to go to bed and stay there for a month. I also can't say I have my hope restored, as I now am going forward expecting the worst but praying for a miracle. It is like my heart is so super sensitive to everything and everything is so much more special right now. I just don't want this to end. It is not like I am preparing myself, because I know I will never be ready and never be prepared for losing my true love and soulmate. It is just that a part of me is for the first time realizing it may actually be possible. I long for denial again, blissful denial.

Anyway, things are moving forward and getting more in control. Tonight I will go to bed next to the only thing that matters to me in this world and feel his warm skin, smell his musky scent, the sound of his gentle breathing and I will feel loved beyond comprehension. This will be a good weekend, I just believe it is going to be and won't settle for anything less.

Hoping everyone here will have a good weekend and share it with their loved ones.

All my love and prayers are here with my LCSC family.

Thank you everyone for all your prayers. I know they have brought us this far and can deliver us a miracle.

Link to comment
Share on other sites

It seems a little better for you both. You deserve so much more. But I am glad you updated and that things are a little better. You are so sweet and good and so strong. I don't know how you are going through this awful thing. If anyone should get a miracle, it should be you and your Keith. Wish there was more I could do except to pray for you and wish you the best as possible.


Link to comment
Share on other sites

Carleen- I think and pray for you and Keith on a daily basis. You are the most positive and accepting person. I always think of you when the Dr's come in the "news" from x-rays, bloodwork and etc. It is so scarry but yet you show strength. I will continue the prayers and please enjoy the weekend.

Hugs and prayers


Link to comment
Share on other sites

Sending a big warm fuzzy blanket right out of th dryer for a big bear hug for you two folks. enjoy the weekend Randy

Link to comment
Share on other sites

Thank you so much for the update Carleen. I too think of you and Keith almost daily and pray for you. I am so glad the pain appears to be coming under control and, wow, what a wonderful doctor you have on your side!

Have a great weekend.



Link to comment
Share on other sites


Thanks for the update. You have this thing so much under control in your mind. It is truly a blessing that you are so in touch with Keiths soul and

well being. If we could just all have that.I'm sure your plans will work out. God Bless You and Keith.


Link to comment
Share on other sites

Thank you for sharing your time with us.

I care so much and I love that you are enjoying the weekend.

I miss that closeness to Brian so much............you describe it so well.

I love the memories and you triggered many.



Link to comment
Share on other sites

Oh Carleen...your story is so emotional...I am here longing to do whatever I can, knowing that the most important thing I can do is pray for you and Keith. God does deliver miracles, and I pray that he delivers one to you. You are an amazing couple, and you have so much love between you that you ride this horrendous wave as one. God answers our prayers in little bouts you know!!! I thank him for Keith's renewed strength and lessening of pain. I hope you are enjoying your weekend together, snuggled up close and enjoying each other. God bless you Carleen...

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...

Important Information

By using this site, you agree to our Terms of Use.